The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers
The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers
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DOI：
10.1186/1471-2458-11-402
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发表时间：
2011-05-27
影响因子：
4.5
通讯作者：
Molokhia, Mariam
中科院分区：
文献类型：
--
作者：
Nacul, Luis C.;Lacerda, Eliana M.;Molokhia, Mariam
背景：肌痛性脑脊髓炎/慢性疲劳综合征或 ME/CFS 的诊断主要基于临床病史，并排除慢性疲劳的可识别原因。由于临床异质性以及缺乏用于诊断和结果测量的可靠生物标志物，病例特征和干预措施的影响受到限制。患有 ME/CFS (PWME) 的人经常报告高度残疾，这是很难客观衡量的。家庭成员和 PWME 护理人员的福祉也可能受到影响。本研究旨在调查 PWME 及其非专业护理人员的功能状态和健康状况，并将他们与患有其他慢性病的人进行比较。方法：我们使用 SF-36 v2 (TM)，采用横断面设计对 170 名年龄在 18 岁至 64 岁之间且具有明确特征的 ME/CFS 患者和 44 名护理人员进行研究。计算平均身体和精神领域得分（量表和组成部分摘要），并与普通人群和患有 10 种慢性疾病的人群的参考标准进行内部和外部比较。结果：PWME 中的 SF-36 得分显着降低，特别是在身体领域（基于平均标准的物理成分摘要（PCS）得分 = 26.8），而且在精神领域（基于平均标准的精神成分摘要（MCS）得分 = 34.1）。最低和最高的量表得分分别是“身体角色”（平均值 = 25.4）和“心理健康”（平均值 = 36.7）。所有得分总体上低于一般人群和其他疾病的特定标准。 ME/CFS 患者的护理人员往往在人群标准方面得分较低，特别是在心理领域（平均值 = 45.4）。 结论：ME/CFS 会导致残疾，并且比癌症等其他慢性疾病对功能状态和健康的影响更大。非专业护理人员以及 ME/CFS 患者都会感受到 ME/CFS 的情感负担。我们建议使用 SF-36 等通用工具，结合其他客观结果测量，来描述患者并评估治疗。
Background: Diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to clinical heterogeneity and a lack of reliable biomarkers for diagnosis and outcome measures. People with ME/CFS (PWME) often report high levels of disability, which are difficult to measure objectively. The well being of family members and those who care for PWME are also likely to be affected. This study aimed to investigate the functional status and well being of PWME and their lay carers, and to compare them with people with other chronic conditions.Methods: We used a cross sectional design to study 170 people aged between 18 and 64 years with well characterized ME/CFS, and 44 carers, using SF-36 v2 (TM). Mean physical and mental domains scores (scales and component summaries) were calculated and compared internally and externally with reference standards for the general population and for population groups with 10 chronic diseases.Results: SF-36 scores in PWME were significantly reduced, especially within the physical domain (mean norm-based Physical Component Summary (PCS) score = 26.8), but also within the mental domain (mean norm-based score for Mental Component Summary (MCS) = 34.1). The lowest and highest scale scores were for "Role-Physical" (mean = 25.4) and "Mental Health" (mean = 36.7) respectively. All scores were in general lower than those for the general population and diseased-specific norms for other diseases. Carers of those with ME/CFS tended to have low scores in relation to population norms, particularly within the mental domain (mean = 45.4).Conclusions: ME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments.